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Hi Ladies
i haven't posted in a very long time on icama. I am 22 months in treatment & have seen the biggest changes with my mood & anxiety. I was having panic attacks & really couldn't get out of bed before all this started. My anxiety is virtually healed. The mind racing, not sleeping & horrible worry that something terrible was going to happen all of the time is gone. I feel positive strong & able to take whatever comes.
My constipation is better but still is a problem at times, I haven't gotten any debilitating headaches in months. My skin on my face looks better, my hair is thicker & shiner.
With all that said I still have ALOT of pain. Some days it is lower and more manageable but never gone. I really thought I was going to be one to heal in a year but evidently that is not my path. I would love to hear some encouragement for those further in treatment or those sneaking a peek at the posts to give me some encouragement on how to persevere & stay positive that the pain will go away some day! Healing with 3 kids & an overbooked life makes it much more difficult but I am up for the challenge just discouraged sometimes that I am not seeing more results.
I still get up 2-3x a night to pee which doesn't help with the fatigue & I have recently been introduced to horrible bloating with I never had before. I am happily on list 3 although it would be nice to try more food. Ideally feel like the introduction of juice plus is making things shift & change for the better but not without a lot of struggle.
I guess this was sort if an update...looking for advice or encouragement to stick this out! It's not easy to think that after 2 years the pain remains.
Amy
Hey There,
Hey There,
It seems that you are healing in the reverse order of how I am healing...lol. My bladder is healing, but the anxiety and - you put it perfectly- feeling like something is going to go horribly wrong still remains. Still- even when I feel this way- I figure something terrible did happen and I am still here functioning so keep on. As far as the one year, two year into treatment...... After I posted about my frustrations with the length of treatment, I received some very thoughtful emails from patients who have taken six years or more to feel well, but they do feel WELL and all three of them said they really don't think of their IC anymore.... What a gift. I only recently ( I will be three years in Aug) began to have days where my bladder does not bother me on list 4/5. The fact that a string of these days has come together has been a little slice of heavens when the bladder pain subsides, it makes my heart issues very manageable. My point is, you are absolutely healing, the bladder will come around ...Absolutely! Plus, I have yet to meet anyone around here who completely healed in a year;)
Wishing you a pain free evening,
Katie
Hi Amy! I too see the changes
Hi Amy! I too see the changes more in having not so much debilitating anxiety and having an almost normal cycle, for the first time ever in my life. But, unfortunately the pain remains hardcore debilitating at times and after 3 years like I just said in my food post feeling rather defeated, but like Katie said I have talked with others who have taken longer to see huge improvements in the pain department and are doing wonderfully now. It may take years, but I know we will get there and we will be able to come back and support those suffering, telling them it will all be a very bad dream. Sending many hugs!
Hi Amy,
Hi Amy,
I too can confirm that I've seen big improvements in many 'other' symptoms - muscles, joints, fatigue, brain fog (the worst), vision changes, etc.. I still have many of these of these symptoms (I don't want to give the impression that I'm off living my life symptom-free) but compared to how I was, there's no comparison. Now, and I didn't for such a long time, I really do believe that the symptoms will get better. For me, they will go eventually and for you, the pain will go too, or at least it will become manageable. We all seem to be battling different aspects of this so nothing is the same for everyone but I am really amazed at the improvements I've seen. I have put no time limit on this and that helps me get through it. My expectations are at rock-bottom so any improvements are amazing. Don't know if this would be helpful to you but this has been my strategy and the only one that's worked. Like Deir, I try to be very grateful every day for things, however small, and this is a great strategy too. I didn't notice changes for months and months, and thought I never would. It's like turning a tanker around. Eventually, little by little, things did begin to happen. I've spoken to others whose pain HAS got better - but at entirely different timescales to what they thought. It will happen, I absolutely believe that, but it may be best not to put a timescale on this.
Katie- who are these people?
Katie- who are these people? I need some encouragement because I am back in nighttime hell and feeling hopeless. Why don't they post on here and help us?
Amy- I will pst more later ((hug))
Amy- I would keep trying to
Amy- I would keep trying to focus on the amazing improvements you have posted here. It shows that so much is changing with your body. The pain is just the last to go but I believe it will happen for you.
I agree that the busy life with kids - or any stressful career or life situatin has to make this process a little harder for those of us in that situation.
Hi Amy!
Hi Amy!
Hugs to you. I really applaud your progress as it is a strong sign that inflammation is reducing. I have made a lot of improvments too but in the early part of the first year I started getting bloating and it will not budge. It is very disheartening but Dr. B says it will go so I try to trust her. When you give the body what it needs, it can heal. But time is critical.
Honestly I don't know where you got that idea about it only taking one year LOL. We have to let go of these. Dr. B hates predicting. She tried to predict with me and lots of things came up along the way that keep moving the goal post. I read on a popular holistic healing website that it takes a MONTH for EVERY YEAR you have shown anything resembling a symptom from the IC tree. For me that would be 3 years. At 1.5 years I have a lot of victories and am high functioning, but none of it is perfect.
What choice do we have? We have to stay this course of giving our bodies what they need to heal, that is, whole food, clean water, and herbal support. Trust your body. It is wispering some lovely signs of progress. :)
If we don't excel at health, the only other option is disease.
I don't know if this is the
I don't know if this is the case with Amy, but Dr B assured me pretty emphatically that I would be well in a year. I really wish she would just stop telling people this. Or at least I wish she had never told me. It makes the trust part a lot harder!
Amy- I also get how mentally difficult the constant pain is. it takes a lot of strength to weather this every day. Also, I now how the interrupte dsleep hurts. I can generally stay asleep once I can fall asleep, thankfully , but it seems like lately, a child is always waking me up and once I am awake, I have to go through the mental game of falling asleep while still feeling like I need to pee. I do not do as well mentally or physically when I get woken up.
Anyway- you are amazing, tackling not only IC but also MS. You are brave and strong and every day is one step closer to your goals
Thank you Deir for that
Thank you Deir for that encouragement! I know I have seen changes but it is soooo hard to be in this much pain & it feels like I just can't catch a break. Nothing is working & it is so frustrating. I know if the pain goes I will feel like I could take ANYTHING that comes my way.
I know it will happen soon....
Amu
You will Amy! When I have a
You will Amy! When I have a good day- that is how I feel.
HI Amy
HI Amy
I am just over three years in treatment and I guess I am still pretty ill - a complex case - as everyone likes to tell me !
i guess I just wanted to reach out about the pain specifically in the hope it might help you just a little whilst you feel so defeated and frustrated.
I think it is really only in the last few months that I have started to notice how some of my worst pain has slipped away. I had very severe pain at the start, burning, pressure, like burning needles inside my bladder, it was constant and made me weep every day. I couldn't sleep with the pain or walk or even deep breathe and never ever believed it could lessen.
well it is starting to. I have a million other symptoms and my body has done things another way around as I still have terrible fatigue , hair loss , massive weight gain, fibro pain , psoriasis etc etc etc !!! I still am uncomfortable much of the time with my bladder but I do really feel it easing little by little.
I said to dr m tonight that one of my bladder related pains was just disappearing month by month. I cudnt even say when it happened last.
I know its taking a very long time - I thought I d be so much better and back at work by now - but I'm nowhere near that. My bladder is far from healed.
BUT - I just wanted to let you know it will happen - I'm sure it won't take as long as I have to feel those blissful changes - becauae i have had many other things going on to complicate my treatment and progress.
I really believe In What we are doing. I wish I was getting better way faster but I keep grounding myself, breathing and staying as calm as I possibly can. I literally focus one day or one week at a time and try to practice some healing meditation every day no matter how upset or frustrated or angry I feel.
I know we will all get there. Just keep going and going. It seems the changes always come. We just have to be there when they do.
Something which really helped us when Dr M told me that just because I have been so far away from normal and with constant pain for so long , it does not mean ii can't get normal and be pain free.
You can and will heal I know it !
Thanks for this- for the
Thanks for this- for the perspective and for the hope!
Thank you so much for that
Thank you so much for that encouragement. I have been in pain for 3 years with very little relief.i just feel like none of us should have to fight this hard for health! I know we will get there ... & yes meditation has saved my life. Hoping for good days ahead for all of us still fighting. We are such strong woman:)))
Amy
Amy,
Amy,
I have also been in treatment for three years and still have pain. The pain is still debilitating in the sense that I can't drive yet, wear jeans, have normal sex, or add food to my diet (still on limited List 1). BUT the pain area has gotten smaller and the intensity has gotten less. My body feels stronger and I can bend and stretch with more ease. I get over really bad flares faster. I know I am healing and it make take another three years to be able to do the things I can't do yet, but that's okay. The main thing is that I'm headed in the right direction.
Hang in there!